Playing the Waiting Game While Living with a Rare Disease
Society for Participatory Medicine
MARCH 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). And again, the more identified patients there are, especially for rare diseases, the better. Familiarize yourself with the drug development landscape. Take time to understand the research landscape.
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